The most wonderful thing happened to me at two in the morning. I woke up suddenly with a clear answer to a problem I was having in my editing process of Mystic. I had described a character in a blasé way and I was reworking the scene. I went to bed thinking about what I had written and wondered if it was believable or if it should be changed again. At two in the morning, I sat up and had my answer. Way Cool! That had never happened before. It was very strange because it was a clear thought in the midst of background noise from a dream. I can’t remember anything about the dream except that there was music. You gotta love the creative subconscious.

Now here’s the Rant….

A few days ago I took both my kids for their yearly physical. Apparently the pediatricians have updated more than their new computer filing system. It was a much more thorough exam than my children have ever had to endure. What’s with the endless list of must have vaccines? What I thought was going to be an easy doctor’s visit turned into a three hour ordeal.

I’m lucky in that our trips to the pediatrician are few. However, we belong to a practice with many doctors. I soon found out there was only one doctor familiar with Arielle’s spinal cord injury. I hadn’t scheduled our appointment with her because Arielle needed to start track conditioning and she wasn’t available.

So, the new doctor walks into the room looks at Arielle and asks why she is in a wheelchair. I’m thinking…oh no! To those of us who can walk, it may not seem like such a big deal to ask but believe me, to Arielle, if she doesn’t know you…don’t ask. I held my breath knowing what was going through her mind. She’s a bright kid and I’m sure she was doing a lot of editing to her reply. She flatly said… “I have a spinal cord injury from a car accident.” At least she didn’t tell the story of how she was skiing and a bear came out and attacked her. Arielle has a whole arsenal of interesting stories ready to reply to that dreaded question from a stranger. The doctor’s faux pas was right after the nurse looked beyond Arielle to me and asked me a question that should have been directed at Arielle. She spoke over her. (Another big no – no!) I’m practically sweating at this point.

Oh it get’s better. Suddenly the new physicals entail completely undressing. I don’t know how we always escaped it before, but it never occurred to me that the kids would have to put on those lovely paper towel dresses. Of course since they are twelve and sixteen, they had to be in separate rooms. The doctor hands Elle (Arielle) the paper towel and says to me “Go with her in the other room and undress her and put that on.” I think I was in such shock that I stared at him in disbelief because he repeated himself. Did Arielle not just answer his question of “How are you doing in school?” with “I have straight A’s?” Maybe I should have added that she has pre calculus and AP courses. Did he really think she was incapable of dressing herself? And what made it all ten times worse was that he said this in front of her little brother, Kai.

The appointment ended with the three of us walking out wondering what had just happened. Never had a visit for a yearly physical been so uncomfortable and stressful. I bought Kai some fast food after telling the doctor we hardly ever eat fast food. (Take that!) And I drove Elle back to school at 6:30 pm. for her Mercato practice. She was quiet which is never a good sign.

Later we talked about what happened. I always try to give the other person’s point of view to help her understand that it wasn’t that the doctor intentionally meant to hurt her. He didn’t know that the things he said were inappropriate. He didn’t treat her like a capable person and that was wrong. Yes, being an adult and being a pediatrician he should have known better however he clung to an old belief system. I’ve written about it before. Walk…Wheel This Way.

I asked Arielle if I could write about this doctor’s visit. She wanted me to make sure I included that it is only when strangers ask the dreaded question that she gets insulted. If she knows you or if it’s a young elementary student that asks, she is okay with talking about her injury. Of course beware; if she’s feeling impish you may be on the receiving end of quite a tale. Apparently she had some new friends in high school convinced she really had been attacked by a bear.

For those adults who follow this journal whether on Facebook, or my Mystic fan page, it is always okay to ask me about what happened and our lives living with Elle’s injury. I wrote about it in 2007 for an online magazine in England and then Rob at the Reeve Foundation added our pictures and posted it last year. I will include both links. I also want to say that even though Amelia in Mystic is paralyzed, I have used only my knowledge of life in a wheelchair for the story. Arielle is very different from Amelia. So, if you have read chapter one…the only incident that is real is the substitute yelling at Amelia to stand for the pledge. Yes, that really did happen and I thought it should be included. But I also must say that the man that embarrassed her is a really sweet man. He made a mistake like the doctor. And I’m a substitute teacher so I can make fun of them.

After all this ranting, I am hoping my mind will calm again so I can get back to my imaginary world of Mystic. Should I be nervous that I enjoy it there so much?

Here are the links..um…maybe you should grab a tissue. While you read it, please keep in mind that Arielle is doing great. She’s an excellent student, she helped encourage the FHSAA to implement wheelchair racing as a track event in high schools, she’s still a talented musician and she wants to be a film director one day. In other words the articles are meant to be inspirational:)

Krista,
I am so happy to have found your blog from Rob on the Reeve Foundation’s website. You are a wonderful writer, and an inspiration. I have now found the time to turn to writing (my “babies” are 22 and 24), and I am loving every second. I’m also inspired by your posts regarding your daughter and family. I started an adaptive clothing line (that’s how I found you – I am on the Shop for a Cure page) last year, and it truly has led me to meet wonderful people, some who have become close friends.
Rob mentions that we are able to read your first chapter of Mystic, but I can’t get there. Would love to read it. I have three stories going right now…hopefully they will be completed some day.
Anyway, just wanted to say hello and how much I’ve enjoyed reading your posts here.
Liz

Arielle sounds like she needs an attitude adjustment
Why does she make up stories when asked what happened? What scares me more is that Mom supports her bratty behavior. I’ve been a quad for 8 years and never thought it funny to make up stories and I’m sure I’ve been asked more than her. What is wrong with a Dr. asking her if she needs help? Again, Mom thinks that’s crossing the line. Wake up and rant about a real problem. I could go on, but somehow I think the family thinks Arielle is above all this and that would upset poor Arielle. Write your “rants” on true problems, not this petty crap.

Jason, Thanks Mystic is fun. I wish I had your talent for illustrations!
Liz, Thank you very much. I’ll check out your clothing line on the Reeve website. Thanks for letting me know. Mystic’s first chapter is on this journal. Or you can join the fan page on Facebook. Follow Rob’s links. I’m going to post chapter two soon.
Anon- I am very sorry if my words offended you. Arielle makes up the stories to be funny. She always tells the people the truth afterwards. I should have been more clear about that. The Dr. never asked Arielle if she needed help. He assumed she did and told me what to do to help her-without knowing either of us. If he would have asked her and spoken to her directly instead of me, I wouldn’t have thought anything of it.